Maybe some progress, but still don't know about marrow

Some good news, maybe. I saw Dr Porter at U Penn 10 days ago (have been remiss with timely posting).  He thought my spleen was smaller, in fact hard to palpate and that some of my nodes were smaller. These findings along with a total WBC count of 7.3 led him to believe I was responding to ofatumumab. 

On the other hand, my ongoing transfusion requirement (including the need for both platelets and red cells the next day after visit) are concerning. Dr Porter (and I) are worried about marrow dysplasia as a consequence of the fludarabine X3 and bendamustine. Copy of my records given to the Penn team showed my last bone marrow cytogenetics to be a bit screwy - a 13q- deletion (which is said to be good prognostic sign if present early and by itself but sadly I had other abnormalities including several cell lines with an extra X chromosome!  Porter thought this was evidence for possible marrow damage and that he would like to do another marrow exam once off weekly ofatumumab to see how the marrow looks with some (hopefully!) control of leukemia. We shall see.

I continue to need weekly RBC transfusions and often biweekly platelets. My total WBC count was down to 5.4 three days ago, so my leukemia seems to continue to respond. Since I had two in-hospital ofatumumab infusions without reaction, my onco group is going to try to do the last two weekly infusions as an outpatient, with the next treatment in two days....crossing fingers, etc.

Finally got through an Arzerra infusion without reaction! And some musings on medical rationing...

So last Friday I was once again admitted for my ofatumumab infusion but fortunately this time around I had no reaction, and left the hospital about 8:30 PM for home.  I did not need any platelets or RBCs either since I had been transfused on last admission with RBC a week ago and platelets 2 days prior. But total WBC was 33.4K and I had only 3% neutrophils. It should be noted that my WBC count a week ago, also after whopping loading dose of dexamethasone (known to increase WBC) was 79.9K so maybe my marrow is starting to respond. Next count is tomorrow so we'll see. Am to visit Dr Porter at Penn for followup in 2 days. 

The cellulitis on left leg is finally healing so looks like I won't need a skin graft. What we thought was dead tissue was probably just a lot of blood under the skin because of my low platelets.

Anyway, onward and upward.....I posted a link to an interesting NYT editorial Beyond Obamacare on Facebook and will share here as well. It is all about the need to ration limited resources in the Medicare age group. I believe it is true but at the same time the need to control costs may directly affect those of us with CLL lucky to get to Medicare age. 

Here is what I wrote on FB about this:

Rationing is inevitable, we should do it rationally, taking a page from UK NICE, and using QALY of around $50K as yardstick - I may be shooting myself in the foot with this,as my leukemia may require quite expensive treatment in the years to come....I am currently in the middle of a 12-infusion course of a second generation monoclonal Ab, which reportedly costs $9K for each infusion....If I can get 2 years remission with this, would meet the NICE criteria....

Wishful thinking re a long remission? Perhaps, since I got very little long-term response from Bendamustine-Rituximab....time will tell. I know that a clinical trial somewhere is in my future.... 

Home from hospital. long road ahead....

I went home 2 days ago (in August) as the infectious disease docs thought with negative cultures including fungal that I had had enough IV antibiotics but with my alterred immune system would need another 10 days of oral antibiotics. Still with much pain when standing or walking, but no significant spread of inflammation at least of the skin area involved.Only a bit of redness at the edges. The central necrotic (dead) area has not increased and I noted a bit of discharge after a shower yesterday.

Two days before going home I finally understood why my leg hurts so much, an MRI showed "Inflammation and fluid collection in the subcutaneous tissues and posterior muscles in lower leg consistent with clinically suspected cellulits and myositis."  That was the first time the involvelment of calf muscles ie myositis was used. Not sure if my treatment team had suspected.that but they did note calf pain, previously having ruled out a deep vein thrombosis with an ultrasound.

I am to see my onco in 2 more days, and infectious disease in 1-2 weeks.  They held my Arzerra treatment again because, I think, I had continued neutropenia and the lesion basically blossomed after my last Arzerra treatment. I had my laptop in hosptial so did a PubMed search for necrotic cellulits and myositis due to Arzerra or Rituxan, and found nothing. So final working diagnosiss is cellulitis/myosits probably bacterial and secondary to inital trauma of unknown etiology.along with neutropenia.

I was distressed to hear from one of the nurses in casual conversaton that my primary onco, Dr T, is not at Hahnemann except rarely and is instead at a Cancer Treatment Center of America hospital in North Philly. I was never told this and along with not knowing I had neutropenai the week before admission I have decided to transfer all my onco care to U Penn even in the middle of this damn leg infection and the courses of Arzerra. I sent an email to the intake nurse asking to be plugged in there. We shall see.

Warning: I am going to show how bad my leg is but to spare those who don't want to bring up a recent meal, I'll start with a few silly photos....


Me on third day in hospital and whopping steroid dose in anticipation of gettng Arzerra (later canceled though) - corticosteroid euphoria:

 

A little help with the small bit of work I did while in hospital (note the Phanatuc was gift from one of the teams I work with...and the laptop was "kindly" brought to me by my fellow editors, so I could finish a project

 

 

 

 

 

AND NOW MY VERY DISGUSTING LOOKING LEG:

 

A curveball just out of reach...or delayed treatment due to bizarre leg infection

So now I am here in hospital, day 8 to  be exact.  A few days before Arzerra infusion #3 I had noted a a non-tender area of redness and thickened skin with a dark scab in center about dime sized on my left ankle. Walking about my property or in the woods, in shorts and sometimes with no socks, I figured it was a bug bite or a scratch from a thorn from the brambles that abound. I did not show my onco because it did not hurt or itch and I figured it was slow to heal...a day after Arzerra #3 the area got bigger, redder and began to hurt. I waited until 2 days later to show to onco since was there for follow-up CBC. Since I had no fever it was decided to try to treat this presumed cellulitis with amoxicillin-clav (Augmentin). I did not realize at the time that I was neutropenic (but my oncol did, thankfully) but in retrospect I guess a trial of oral meds still would have made sense Note that since I live in deer tick area and have had acute Lyme twice, this was one of the reasons for using amox-clav which would cover Lyme. My doc was worried about whether I should get my next Arzerra and scheduled an infectious disease consult for 2 days later. The sore area increased with more pain, particularly while walking and when I saw the ID doc he recommended admission for IV antibiotics.

Over the last week I have received antibiotics to cover MRSA, Pseudomonas and even Lyme (titers pending). The area of redness spread and the central dark area (necrotic tissue) enlarged. A skin biopsy was done and fungal cultures, nothing found yet. I have had packed RBC twuce and platelets 3 times. Needless to say the Arzerra was held.

Today for the first time the redness seems less and I can walk flat footed as opposed to on my toes. Still with pain but less, I think. Some studies still pending including Lyme titer and specail stains of fhe skin biopsy for weird bacteria like atypical mycobacteria. Going to get an MRI of the area to rule out bone involveent and or abcess underlying, hopefully today (maybe should hav done sooner but I am second guessing my docs here...)

So the best scenario for me is if continutes to improve and can get my Arzerra in a few days. My spleen is much smaller as are nodes in underarm area and total WBC is less than 5K.... so may have started to respond.

"Well now life throws us curve balls we never can reach" -- Jimmy Buffett

Third Arzerra infusion went OK, sort of..and other concerns

I was admitted to hospital last Friday so could get the whole 2,000 mg of ofatumumab if rate had to be slowed due to reaction.  My onco had me take the equivalent of 20 mg of dexamethasone (~130 mg of prednisone) the night before, which along with another loading dose of same and Benadryl we had hoped to avoid another infusion reaction. Unfortunately I did have a cough and wheeze reaction at 100 cc/hr (half the max rate) so we dialed the rate back and slowly worked up again to 100 cc/hr, but no higher as I was resigned to staying overnight. So, at 3:30 AM the infusion was complete. I got a unit of platelets as my count was 5K again, but my hemoglobin on admission was 9.5 (3 days past transfusion). My total WBC was in the 80K range which was disappointing but I was reassured that may have been due to the steroid load....

So far no lymph node decrease that I can tell but am trying to tell myself my spleen seems less palpable. Three days after the hospital stay my counts were as follows total WBC 20K, Hgb 7.5 and plts 7K. Only got platelets yesterday.

Two new issues, of concern:

• What I thought was an insect bite on my ankle slow to heal has gotten necrotic looking with some surrounding redness and increasing pain. My onco was alarmed, started me on amoxicillin-clavulinate and am to see an infectioius disease specailist tomorrow as it could be something more exotic - atypical Lyme perhaps? Have had before with a necrotic looking skin lesion rather than the typical halo appearance. Many deer ticks in the woods where and I walked the dogs in the woods almost daily this past week. Having had Lyme X 2-3 and anaplasmosis, I am very careful to check for ticks. Since one sees far fewer in the heat and humidity of July and August, I may have let my guard down. ..so far 24 hours on the antibiotic there has been no spread but it sure is painful. If something exotic or worrisome, my onco may hold my Arzerra this week, again to be given in hosptial...
• Yesterday in the onco office my weight was only 159 lb, which is the lowest its been.. I weighed myself clothed only in birthday suit  this AM and was only 153, which is about right - shoes and clothes usually weigh about 6 lb....I guess I really do have signiificant muscle wasting - cancer cachexia, as it were - and don't know if increasing calories may help. I may try the Ensure Muscle Health shakes and if I can get feeling just a bit better, ie less need for RBC transfusion may do some light weight lifitng (dumb-bells no more than 20 ob apiece)

Oh well the games go on...I am not going to feel too sorry for myself especially since I just heard a friend with lung cancer has brain mets.....

A glimmer of progress, and more on U Penn-Novartis partnership

So today I came in for a scheduled RBC transufusion, as my Hgb was 7.7 last Friday when got my second ofatumumab dose. I expected to also need platelets again especially since have had an ongoing bloody nose...got both and was delighted to hear my total WBC was down to 18.7, presumably due to the partial dose of Arzerra I recieved last week.

There was an expanded story on the U Penn partnership with Novartis in the Daily Pennsylvanian, the college newspaper.

Some excerpts thereof:

The first steps in the Penn-Novartis collaboration involve a focus on developing cell production facilities, bringing to Penn the first Center for Advanced Cellular Therapies. This new building will allow researchers to develop and manufacture chimeric antigen receptor technology for the treatment of cancer, according to Novartis’ press release. Research collaborations will also begin during the first year

The construction of new cancer research facilities at Penn will allow for the expansion of the number of patients who can be treated. “Because the clinical results were so striking, Penn had more than 5,000 patients or families contacting us wanting to enroll on clinical trials,” said Bruce Levine, a professor of pathology and laboratory medicine at the medical school

Not hard to believe since CLL is most common  adult leukemia, and justifies my prior skepticism about getting into that trial, even though the patient profiled in New England Journal article sounds a lot like me (except for the 17p deletion part, so far not applicable to me)

The patient received a diagnosis of stage I CLL in 1996. He first required treatment after 6 years of observation for progressive leukocytosis and adenopathy. In 2002, he was treated with two cycles of rituximab plus fludarabine; this treatment resulted in normalization of blood counts and partial resolution of adenopathy. In 2006, he received four cycles of rituximab and fludarabine for disease progression, again with normalization of blood counts and partial regression of adenopathy. This response was followed by a 20-month progression-free interval and a 2-year treatment-free interval. In February 2009, he had rapidly progressive leukocytosis and recurrent adenopathy. His bone marrow was extensively infiltrated with CLL. Cytogenetic analysis showed that 3 of 15 cells contained a deletion of chromosome 17p, and fluorescence in situ hybridization (FISH) testing showed that 170 of 200 cells had a deletion involving TP53 on chromosome 17p. He received rituximab with bendamustine for one cycle and three additional cycles of bendamustine without rituximab (because of a severe allergic reaction). This treatment resulted in only transient improvement in lymphocytosis. Progressive adenopathy was documented by means of computed tomography (CT) after therapy.

 Now however with this new push, many more patients could be studied, hopefully to include moi!

 

Second ofatumumab treatment

So this past Friday I had my second infusion of ofatumumab (Arzerra), this time a total dose of 2000 mg was to be given by the same slowly increasing rates, this time in the onco office. I had gotten through the 300 mg dose last week without reaction but was not so lucky this time,  about 3-4 hours into the protocol I got feeling weird with some shivering, after I had sweated profusely. The infusion was stopped, I was given more Decadron. My doc elected to send me downstairs to get platelets as once again the count was only 7K. (no RBC since did not have much time and Hgb 7.7) The only good news on my counts was that the WBC fell to 40K from 80K the week prior, presumably in response to the first albeit low dose of ofatumumab.  After getting the platelets I went back upstaris for an attemtpt to get more of the infusion, but had a sweating reaction again and they had to stop again. I probably did not get even a third of the total dose so the plans for next week are do the infusion in the hospital so can get even if takes all night...and if I need blood cells can also get. As much as I hate the idea of staying in hospital I need to get the full dose of Arzerra to get any benefit.....